Monday, July 17, 2006

"A Very Special Wedding"

I love happy stories like this!



http://www.time.com/time/magazine/article/0,9171,1214946,00.html

It's a perfect morning for a wedding in tiny Dolgeville, N.Y. A soft breeze tames the July sun; birds do tremolos from above the clapboard cottages of a village so quaint it holds an annual Violet Festival. Beneath the narrow spire and wooden beams of the United Lutheran Presbyterian Parish, Carolyn Bergeron, 29, and Sujeet Desai, 25, are about to take their vows. "There is news today," says the Rev. James Paulson. "Love," he says, can't be stopped by cultural differences or different faiths. "Love can't be stopped by Down syndrome."

Carrie and Suj, as they're known, beam through much of the ceremony--their second, having already celebrated a Hindu ritual the week before--but the rest of the 140 people present, Pastor Paulson included, are fighting back tears. In the congregation, wearing expressions of awe and envy, are half a dozen friends from the National Down Syndrome Congress, which holds an annual meeting for adults with DS. Bergeron and Desai met at one of those sessions two years ago. ("I told my mom I wanted to date her," Desai recalls. "I was shy. I couldn't say anything, so Mom helped.") Both bride and groom are high achievers, advocates and role models within the DS community. She has given many inspirational speeches (often comparing herself to an oddly shaped tomato in her dad's garden--"different but just as juicy"). He performs on the piano, the clarinet and four other instruments. Both have led workshops in which they demonstrate black-belt mastery of martial arts (hers in karate, his in Taekwondo).

This generation of young adults with DS has shattered old ideas about what is possible for people who carry an extra 21st chromosome in their cells--the cause of DS--and what opportunities society owes them. They came of age in an era of early-intervention programs to spur physical and mental development--Desai began one at 7 weeks. Once in school, they were included in regular classrooms when possible and were offered tutoring and special classes when needed. Both bride and groom are high school graduates. Just as critical, this generation has benefited from medical care addressing the heart and gastrointestinal defects, eye problems, thyroid issues, obesity and other health woes that, for reasons that are poorly understood, often tag along with mental retardation as part of Down syndrome. The result: their average expected life span has doubled, from 25 in 1983 to 56 today. And as adults, they have had the Americans with Disabilities Act ensuring them a right to be accommodated in the workplace where possible.

While inclusion is the watchword for today's disabled Americans, social isolation remains a painful problem. "Once they leave high school, they can fall off the earth because of a lack of services," says Dennis McGuire, director of psychosocial services at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. "If they're stuck at home, they can end up feeling very much alone."

Carrie's mother Peggy became concerned about her daughter's social and romantic needs as Carrie entered adulthood. "When the loneliness began to loom around 21 and she saw her sister and brother having relationships and getting married, she longed for it," says Peggy. Group discussions at a nearby resource center for people with disabilities brought "some comfort," she says, but Carrie continued to talk about meeting her "Mr. Right." Says Peggy: "We never dreamed it would happen."

Sujeet's mother Sindoor, however, says she "had marriage in sight straightaway" once Sujeet expressed interest in Carrie. "We come from a different culture," she explains. As India-born Hindus, Sindoor and Sharad Desai, both dentists, "don't expect dating and breaking [up]." Nor did Sindoor wish to expose her vulnerable son to the emotional upheavals of serial entanglements.

With help from their families, who live about 90 minutes apart in upstate New York, the couple began dating. At a Valentine's Day party, "I had my eyes on her all the time," Sujeet recalls. Later that night, "I started to kiss her. She loved it!" The two began speaking by phone daily. Says Peggy: "They can talk about things"--like what they plan to eat for lunch that day--"that we'd get bored with." Finally, with plenty of plotting by both families, Sujeet popped the question onstage after he played a concert for people with disabilities, a moment that can be viewed on his website, Sujeet.com Says Carrie, who has exemplary verbal skills: "There are not many words to express how much I really love him. He's beyond words."

While love was blooming, the two families worked hard to create a system that might support an eventual marriage. There were few role models to follow. Many older adults with DS live in residential facilities that do not accommodate married couples. Another reason such marriages are rare--no one knows exactly how many there are--is that marital status can affect the amount of support that adults with disabilities receive from federal aid programs administered by the states. "People who might otherwise be interested in marriage don't want to risk losing their benefits," says Dr. William Schwab of Madison, Wis., who has worked as a consultant on sexuality issues for the National Down Syndrome Society.

Luckily for Carrie and Suj, New York State offers an innovative pilot program that allows individuals with developmental disabilities to design their own support plan, subject to state approval. The endlessly devoted Desais and Bergerons pressed for a plan that would allow the newlyweds to live together in their own apartment, located midway between the two family homes, and receive part-time aid with tasks like cooking. "They don't need baby sitting every hour," explains Sindoor. "What they need is money management and transportation" to part-time jobs, volunteer work, exercise classes and other activities. The "self-determination" program requires enormous initiative and hard work from the young couple, as well as those in their circle of support, but it allows them to take considerable responsibility for their own lives. "We want them to become as independent as they could be," says Sindoor, "so when we are not around, they can manage."

The most delicate questions arising from a marriage like this one concern sexuality and parenthood. Women and especially men with Down syndrome have low rates of fertility, but pregnancy is possible. Carrie reluctantly ruled it out, even before she met Suj, when her mother told her, correctly, that she would have a high risk of bearing a child with DS. "I just burst into tears," she recalls, "and then I said I would not have any children." A tubal ligation ensured the decision. But she says she and her new husband have other dreams to sustain them: "To continue with our speeches, to continue to make a difference in this world for people with special needs, to have some fun time too. And to take care of each other."

For more photos of the couple's Hindu wedding ceremony, go to time.com

2 comments:

mum2brady said...

I loved this article Annette! Suj and Carrie such great self-advocates, I love that their wedding really attracted the media - they are paving the way for the rest of us! What an amazing couple!

Anonymous said...

That was such a great article!! I went into the web site and looked at the rest of the pictures...so beautiful!! Thanks ...Jen